February 08, 2010
Taking the pig out of the poke: Swine Flu and the public trust
by Quinn O'Neill
As the swine flu fiasco fades into the past, many people are breathing a sigh of relief; some because they were worried about getting sick, and some because they were sick of hearing about it. Since it all began, I’ve spent innumerable hours reading about the virus and vaccine. I read the peer-reviewed literature, newspaper articles, science blogs, magazine features, and vaccine package inserts. I read the unscientific stuff too; the conspiracy theories and the sensational reports of rare side effects.
I have come to a few conclusions. First of all, we can’t all make fully informed decisions about such issues. There is too much information and there are too many issues. Where do I stand on the issue of global warming? I hesitate to say; I spent all of my free time reading about the swine flu.
For many people, the quality of the information is as problematic as its quantity. The primary literature isn’t written in a way that is comprehensible for those who have no knowledge of medicine, statistics, and research design. The mainstream media conveys information in ways that are easier to understand, but the message ultimately depends on the source. Reports from the National Vaccine Information Center and the CDC in the United States, for example, would lead people to markedly different conclusions.
Perceptions of credibility are variable and subjective, and members of the public are ill-equipped to distinguish reliable evidence from sensationalism. For these reasons, it is crucial that the public be able to trust scientific authorities and government agencies to advise them appropriately. For a mass vaccination effort to be successful, people need to believe that authorities hold their health and safety as top priorities. Many people do not believe that this is the case. Their doubts may well be justified.
On various internet forums, ardent science defenders tossed insults and ridicule at the anti-vaccine crowd. They raved about the “overwhelming evidence” and “solid science” as if they have read all of it and judged it for themselves. The heart of the problem, however, is not the evidence or the quality of it, but the perceived lack of credibility of the authorities. In this respect, and this respect alone, I do sympathize with the anti-vaccine perspective. The authorities who are supposed to be ensuring our health and safety do not have a good track record.
There is a long list of chemicals that are currently on the market, which are known or suspected to cause cancer or other serious health problems. Bisphenol A and phthalates have been hard to miss in the news. The controversy surrounding aspartame seems to have gone away, but the many studies that suggested its carcinogenic potential have not. Perfluorooctanoic acid is a suspected carcinogen commonly found in non-stick pans. And hundreds of dangerous industrial chemicals have been detected in the umbilical cord blood of newborns.
Despite studies that suggest related health risks, these substances remain in widespread use. It would seem that when it comes to the safety of the products we consume, we have to be 100 percent sure, beyond any shadow of a doubt, that the product will kill us before we consider taking it off the market. This would suggest to me that financial considerations figure more prominently in the minds of policy and decision makers than does public health. Why should we continue to trust agencies that allowed the market to be flooded with products of questionable safety?
The wide ranging influence of industry is undeniable. Industry studies are significantly more likely to yield results and conclusions that favor industry products. They are also more likely to be published in high impact journals. For those of us who are willing and able to wade through the published literature and draw our own conclusions, it is becoming increasingly difficult to evaluate the evidence.
For any given product, the available studies usually yield mixed results. Some suggest that the product causes cancer, for example, while others fail to identify a link. It is important to note, however, that negative results and positive results don’t necessarily balance one another out. An effect is typically considered to be significant if it is large enough that we can be 95% sure that it couldn’t have occurred by chance alone. If we cannot be 95% sure, than we fail to find a significant effect. The substance may still be hazardous, but not to the extent that we can be really confident about it. It could also be hazardous in ways that weren’t investigated.
It follows from this, that a study demonstrating a significant risk is greater cause for concern than a negative study is cause for reassurance. The positive result implies that the drug is unsafe, but the negative result does not imply safety. Narrative reviews done by industry sometimes seem to forget this. They typically critique the positive studies, emphasize the negative ones, and conclude that the overwhelming evidence supports the safety and continued use of their product.
The available evidence may also be insufficient to definitively answer important questions. According to vaccine manufacturers’ package inserts, animal reproduction studies have not been conducted with H1N1 or seasonal flu vaccines. CSL elaborates, “It is also not known whether these vaccines can cause fetal harm when administered to a pregnant woman or can affect reproduction capacity.” If pregnant women were to be encouraged to get the vaccine, why were animal reproduction studies not done? If we don’t know whether these vaccines can cause fetal harm when administered to a pregnant woman, it would be prudent to find out.
Claims of vaccine-related miscarriages have been surfacing on the internet. The responses of vaccine defenders follow automatically and predictably. Temporal associations between the vaccine and miscarriages are attributed to coincidence. We are reminded that there is no evidence to suggest that flu vaccines can cause miscarriage. I agree that there is no evidence for such a link; but I think that we really ought to have looked. Potential to cause fetal harm should be investigated for any drug that is going to be widely used in pregnancy. Failure to do so is irresponsible. It cannot honestly be said that the benefits of a vaccine outweigh the risks if there are serious risks that are unknown. These are serious risks.
WHO coordinated a global effort among developed countries to donate vaccines to poorer countries. Superficially, this seemed like a really good idea. Let’s all pitch in and help supply developing countries with vaccines to save lives. The fact is, however, that more people died from hunger every day in developing countries than from H1N1 all year. Why did WHO advocate expensive vaccinations for people who were many times more likely to starve to death? If world public health is their number one priority, their actions are inexplicable.
Science and technology is only as noble as the purposes for which it is used. Evidently, it can be used to generate profit and to improve our lives. It can also expose us to health hazards and create new problems. Science and technology brought us industrial chemicals that now pollute the environment and threaten wildlife. It brought us effective antibiotics, antidepressants, and pain medications that are now detectable in our drinking water. It may be making our lives healthier and easier in the present, at the expense of future generations.
Blind faith in anything is dangerous, but perhaps especially so with science and technology. Medical professionals and lay people alike were primed to dismiss claims of vaccine side effects. Refusal to consider the possibility of a causal link is problematic when it leads to underreporting of adverse events. Physicians’ unwillingness to report such cases was a common complaint among those claiming serious side effects. While it is entirely possible that these incidents were unrelated to the vaccine, it is unacceptable for physicians to decline to report the incidents.
While I don't deny that the anti-vaccine movement may cause serious harm, knee jerk reactions and indiscriminate slinging of ridicule and insults seems to be more popular among the pro-vaccine camp. This too can be dangerous. It may have the effect of silencing those who distrust science without alleviating their fears. More importantly, it may stifle valid criticisms. On several occasions, the mere suggestion that we should conduct animal reproductive studies earned me the label of ‘anti-vax wingnut’. It also elicited statements about polio and pertussis vaccines and the alleged mercury-autism connection. Many members of the pro-vaccine camp seem to think that all vaccines and all applications of vaccines are the same. If one is safe or appropriate, then they all must be. Any criticism of any aspect of a vaccine merits the same response.
As we move further into what Bill Gates has called “the decade of vaccines”, the automatic dismissal of all vaccine criticisms becomes increasingly hazardous. Childhood vaccination is at an all time high and the vaccine industry is still growing. We routinely vaccinate livestock, fish, and pets, and we are exploring the potential for new vaccine uses. Each use of each vaccine must be considered separately. The safety and efficacy of a pertussis vaccine will tell us nothing about the safety and appropriateness of a new vaccine developed to reduce methane emissions from livestock.
Expressing any criticism of vaccines, science, or government agencies now carries a serious risk to one’s reputation. Wolfgang Wodarg, an ignorant, self-aggrandizing, flaming asshole, according to epidemiologists of the science blog, “Effect Measure”, put his reputation on the line when he called for an inquiry into WHO’s management of the swine flu.
In my opinion, the inquiry is an excellent idea. If WHO is exonerated, its damaged credibility should be somewhat restored. Similarly, if inappropriate ties to vaccine manufacturers are identified and steps are taken to remedy the situation, the image of the agency should improve. Assurances from authorities whose own credibility has been questioned do little to quell public suspicion and distrust. I respect Wodarg for having the integrity to take this personal risk.
Now is a bad time for scientific authorities and government agencies to lose the trust of the public. The human population is growing at an alarming rate and the availability of essential resources is declining. The environment is becoming progressively less habitable to our own species and to many others. A variety of health conditions are on the rise: cancer, diabetes, asthma, and autism. Science offers the best chance of finding real solutions to these problems. Government agencies need to be trustworthy; and we need to have the integrity to challenge them when there is doubt.
Posted by Quinn O'Neill at 09:05 AM | Permalink






















Comments
http://www.teresaforcades.org/
Posted by: anechoic | Feb 8, 2010 11:27:05 AM
Previous comment is spam. Please remove. It would be nice if you could anvil the poster, but that's probably impossible.
Posted by: Zora | Feb 8, 2010 1:31:58 PM
someone that I know who is in the CDC, when I remarked about how the furor had died down about H1N1 emailed me back: "ahh...perceptions"
He told me that this thing is still in full force, and there is quite a focus on this spring as this started spring of last year.
It ain't over till the fat lady sings! Seems to make sense to continue precautions like washing your hands frequently; even get a flu shot still.
Posted by: odysseus14 | Feb 8, 2010 3:53:39 PM
Quinn, thank you so much for this sensible, mature, moderate, civil analysis. More voices like yours need to rise above the fray of hyperbole coming from both extremes.
Posted by: mentalelevation | Feb 8, 2010 4:04:52 PM
"...the anti-vaccine movement may cause serious harm,..."
MAY?
Don't pretend to sit on the fence and pretend be a moderate if you're going to make statements like this.
If you can't already see the harm done, there's no point in arguing with you.
Posted by: walt | Feb 8, 2010 4:29:51 PM
my link was not SPAM thank you -- if you had bothered to go to the web site you would see it was highly relevant to the article
Posted by: anechoic | Feb 8, 2010 4:50:10 PM
here is a better link of Sister Theresa Forcades talking about the H1N1 vaccine and the history of swine flu.
http://www.youtube.com/watch?v=A0JqQyl09zQ
I think even Zora can handle this ;)
Posted by: anechoic | Feb 8, 2010 4:53:32 PM
Yeah, the true vaccine authority is coming from a website that also discusses chemtrails and the New World Order.
With a straight face, I might add.
Posted by: walt | Feb 8, 2010 5:31:14 PM
You sound like a real non-reactionary there walt. Why I might even say the very image of objectivity. There's certainly no irony in the fact that you are striking the exact obstinate pose referred to in the essay.
By the by, why would you waste your time and energy on such a flimsy, ignorant website anyway? I think there's plenty of other sites that would more readily accomodate your hard-nosed, realist perspective.
Posted by: mentalelevation | Feb 8, 2010 6:16:29 PM
mentalelevation,
You don't see the irony with posting a link to a website that takes seriously conspiracy theories about LHC in the comments section for an article about perceived scientific credibility?
Posted by: chris | Feb 8, 2010 7:42:46 PM
Oh Chris, he's right, I'm just being hard-edged, rigid and reactionary.
As for my tone, mentalelevation, I think you're doing a lot of interpretation.
The anti-vaccine movement has caused harm to public health. Driving down inoculation rates because Dr. Wakefield and his cronies wanted to make some money - and he still is, now in Arizona, as the UK won't let him peddle his nonsense there - was a complete disaster in terms of public health. It will take years if not decades to repair the damage done.
There is no "may" in there. Period.
And yeah, I demand a higher level of proof than a quack doctor nun's conspiracy theory website. Sorry, that's just the way I am.
But go ahead, fill me in. Point me in the right direction. I'm all ears.
Posted by: walt | Feb 8, 2010 8:08:15 PM
This is an amazingly complex issue. Quinn has done a good job laying down a skeptical position that does not prejudge. I wish I had time for more than a quick mental dump, but alas. Indeed, the fact I don't have the time is part of the problem.
Public debate is seen as a doubly edged sword in politicized scientific fields, and the fields that have become politicized has swelled in the last forty years years. Dishonest players in various movements, anti-vax, anti-global warming, pro-bio food, pro- and anti-GMO, etc, have made the use of pseudo-science in the public sphere common. As the barriers to contribute in the media have fallen, the marketplace of ideas has become muddled. This puts actual scientists in a tricky spot: do they air criticisms publicly and give more ammo to the non-science crowd?
To do so put one a tricky position. The public is, unfortunately, the product of a failed science education curriculum. Too many people have a hard time distinguishing between a scientist who is asking good questions, and a quack who is trying to sow FUD (fear, uncertainty, doubt) and score rhetorical points. Cognizant of this, many scientists instead try and resolve questions behind doors, or in language that is unaccessible to most (and often behind a pay-wall). Those who go public are often putting personal relationships on the line. Not because their questions are bad, but because they are perceived as leading to confusion and anti-scientific backlash.
This lack of reasonable public discussion reinforces stereotypical views of science as being a monolithic consensus. But far worse, it can end up stifling the very questioning and studies that ought to be done! It leads to a reflexive defense of science (which can be done reasonably or not, but that's a different discussion), instead of a willingness to openly discuss various questions. This attitude can be particularly detrimental in "working" sciences: doctors respond with assurances instead of discussing the unknowns, meteorologists give us forecasts instead of uncertainties. (I'd be willing to hypothesize that weather forecasters have done more to hurt the image of science than any single scandal.) Part of it is wanting to capture that ethos of scientists as father figure, and part of it is in a misplaced effort to avoid the loss of legitimacy.
I haven't even touched on issues of funding, particularly corporate money, and the priorities of the State don't get off the hook either. The fall in independence of the academy has hurt it greatly in the last decades, a fact which many scientists have yet to wake up to. Etc, etc.
I'm out of time. Sadly, engagement in this discussion within the Universities I've worked at is still limited. Some people who are clued in are very aware of the dangers looming in the distance for science if attitudes don't change. But not nearly enough.
Posted by: Cyrus Hall | Feb 9, 2010 5:42:11 AM
Cyrus -
What I find especially troubling in all this is that people seem to revel in their own ignorance. By this I mean that they seem to trust their own minimal anecdotal evidence (Jenny McCarthy in the USA and autism, as an example) rather than trust in the scientific model, or place their trust in one or two scientists instead of listening to what the majority of scientists in a particular field may have arrived at.
As I'm sure you've noticed, I'm no fan of Wakefield, but he's a scientist too. And my own family doctor, when growing up - the very man who delivered me, and a family friend to boot - eventually went off the deep end in the fringe orthomolecular medicine movement, as well as making dispensing such unusual advice as the medical benefits of drinking one's own urine. (That's where he lost me and my mum, by the way.) Having an formal medical education does not confer automatic authority on someone - see again the doctor-nun previously mentioned.
That said - you can't trust a doctor (my own quack, or Sister Forcades as examples, and you can't trust an individual scientist (the Wakefields of the world as my example), frankly, we're stuck with what the consensus in the medical and scientific fields yields.
Your mileage may vary.
Posted by: walt | Feb 9, 2010 10:00:03 AM
Walt-
I'm in no way against the "consensus" process, but consensus is often far from the whole picture. Take the example of this article, the Swine Flu vaccine. The scientific consensus was that the risk of a serious epidemic far outweighed unsuspected problems. I.e., based on short trials, previous experience, and argument by kind, the vaccine was thought to be safe. Indeed, this has largely been born out. But that does not mean that problems with the vaccine don't exist. Indeed, problems of potency and storage have been issues, and there are other unknowns, as the article discussed. This shouldn't be construed as an argument against taking the vaccine.
Second, my point was more that, even if the consensus is perfectly valid, its acceptance by the public is not, largely, based off the merits of the argument, but on the authority science carries. Where that authority comes from is complex, but some of the actions that scientists have taken in the past decades have eroded the authority of science in the eyes of the public. Often deservedly so. As the barriers to entry into the mainstream public debate of collapsed, science has had to reface an old question: should scientists and science organizations actively participate in the public discussion? Until the last few years, the answer had largely been no (I tried to explain some of the reasons above). This has allowed negative stories to predominate the news landscape, without perspective.
The average American, according to polling, now believes global climate change is at least partially a lie propagated by science. Think about that for a second. One can't just shrug it off as ignorance and go about his or her day. This has happened because climate scientists have let everyone else tell the story for them, instead of injecting themselves into the public sphere. (No, Al Gore doesn't count.)
Carl Sagan is remembered warmly by almost everyone. He tried to educate not by ignoring complexity, but by bringing it to the forefront and giving it a hearing. I think anyone working in science today should take a class or two on how to do the same.
Posted by: Cyrus Hall | Feb 9, 2010 10:58:03 AM
Valid points all, Mr. Hall.
I do worry, though, that you seem to be blaming the messenger instead of blaming the ignorance of people.
And I couldn't agree with your last point more, but I wish I could.
Posted by: walt | Feb 9, 2010 11:31:32 AM
Walt-
My point is that some of the messengers are missing in action. If your message isn't being broadcast, it loses out in the marketplace of ideas. While ignorance can be a learned condition, it can also be due to lack of exposure.
Cheers!
Posted by: Cyrus Hall | Feb 9, 2010 12:09:35 PM
walt, I apologize since I've realized that this, "the true vaccine authority is coming from a website that also discusses chemtrails and the New World Order" was a criticism of the Theresa Forcades site, not 3QD (I love this site, so I took it a bit personally). However, I think you could understand my misinterpretation as your first comment regarding, "...the anti-vaccine movement may cause serious harm,..." did seem a bit overly hostile when this, "In this respect, and this respect alone, I do sympathize with the anti-vaccine perspective" appears much earlier in the essay. I don't think anybody here would suggest that the anti-vax movement is in any way contructive. Still, what Quinn does well here is to draw attention to why the broad skepticism that led to this movement arose due to social/political forces and not strictly those of empirical evidence. And that part of the blame for those social/political forces can be laid at the feet of the scientific establishment itself. Cyrus also points this out in his comments. What I enjoyed about this essay is it's willingness to sympathize with the way in which the average person comes in contact with scientific information without becoming too polemical about it. More people need to take measured tones rather than riding their high-horse of self-righteousness when it comes to these issues. Including scientists, as they have nearly as great a tendency to fall in with dogma as the next person. The level of stubborness expressed by many scientists when alternates to the status quo are presented is a well-worn topic in philosophy of science. As well, their obstinance expresses itself in ad hominem attacks as often as it does through rational argument. We're all human and flawed, but those who would vaunt the power of objective observation and analysis in science ought to be willing to exercise the same humility in their social interactions, even when (or perhaps, especially when) they are undertaken on behalf of science.
Posted by: mentalelevation | Feb 9, 2010 4:12:54 PM
Walt,
I apologize since I've realized that this, "the true vaccine authority is coming from a website that also discusses chemtrails and the New World Order" was a criticism of the Theresa Forcades site, not 3QD (I love this site, so I took it a bit personally). However, I think you could understand my misinterpretation as your first comment regarding, "...the anti-vaccine movement may cause serious harm,..." did seem a bit overly hostile when this, "In this respect, and this respect alone, I do sympathize with the anti-vaccine perspective" appears much earlier in the essay. I don't think anybody here would suggest that the anti-vax movement is in any way contructive. Still, what Quinn does well here is to draw attention to why the broad skepticism that led to this movement arose due to social/political forces and not strictly those of empirical evidence. And that part of the blame for those social/political forces can be laid at the feet of the scientific establishment itself. Cyrus also points this out in his comments. What I enjoyed about this essay is it's willingness to sympathize with the way in which the average person comes in contact with scientific information without becoming too polemical about it. More people need to take measured tones rather than riding their high-horse of self-righteousness when it comes to these issues. Including scientists, as they have nearly as great a tendency to fall in with dogma as the next person. The level of stubborness expressed by many scientists when alternates to the status quo are presented is a well-worn topic in philosophy of science. As well, their obstinance expresses itself in ad hominem attacks as often as it does through rational argument. We're all human and flawed, but those who would vaunt the power of objective observation and analysis in science ought to be willing to exercise the same humility in their social interactions, even when (or perhaps, especially when) they are undertaken on behalf of science.
Posted by: mentalelevation | Feb 9, 2010 4:14:43 PM
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